Caregiver Health‐Related Quality of Life, Burden, and Patient Outcomes in Ambulatory Advanced Heart Failure: A Report From REVIVAL

Abstract

Background Heart failure (HF) imposes significant burden on patients and caregivers. Longitudinal data on caregiver health‐related quality of life (HRQOL) and burden in ambulatory advanced HF are limited. Methods and Results Ambulatory patients with advanced HF (n=400) and their participating caregivers (n=95) enrolled in REVIVAL (Registry Evaluation of Vital Information for VADs [Ventricular Assist Devices] in Ambulatory Life) were followed up for 24 months, or until patient death, left ventricular assist device implantation, heart transplantation, or loss to follow‐up. Caregiver HRQOL (EuroQol Visual Analog Scale) and burden (Oberst Caregiving Burden Scale) did not change significantly from baseline to follow‐up. At time of caregiver enrollment, better patient HRQOL by Kansas City Cardiomyopathy Questionnaire was associated with better caregiver HRQOL ( P =0.007) and less burden by both time spent ( P <0.0001) and difficulty ( P =0.0007) of caregiving tasks. On longitudinal analyses adjusted for baseline values, better patient HRQOL ( P =0.034) and being a married caregiver ( P =0.016) were independently associated with better caregiver HRQOL. Patients with participating caregivers (versus without) were more likely to prefer left ventricular assist device therapy over time (odds ratio, 1.43; 95% CI, 1.03–1.99; P =0.034). Among patients with participating caregivers, those with nonmarried (versus married) caregivers were at higher composite risk of HF hospitalization, death, heart transplantation or left ventricular assist device implantation (hazard ratio, 2.99; 95% CI, 1.29–6.96; P =0.011). Conclusions Patient and caregiver characteristics may impact their HRQOL and other health outcomes over time. Understanding the patient‐caregiver relationship may better inform medical decision making and outcomes in ambulatory advanced HF.

Interventions for Caregivers of Heart Disease Patients in Rehabilitation: Scoping Review

“…The studies that refer to the time of intervention mostly describe 12 weeks, and how the different types of intervention are distributed over time is not defined. Concerning the context, most studies describe their programs/interventions in the home setting (7), two in a hospital setting, two in primary health care settings, and one in a rehabilitation center (1). In the home-based context, face-to-face and telehealth follow-ups are referenced (Table 5).…”

“…Caregivers must deal with activities of daily living that they previously did not need to do, and thus experience different problems. Thus, many aspects of the physical and mental health of caregivers, as well as their social and family life, are affected negatively for playing the role of informal caregiver, causing physical, psychological, relational, and well-being problems, at both the personal and family levels, as a result of the demands of caring [ 6 , 7 ]. Another problem is that heart disease patients and caregivers often share common risk factors for heart disease, such as obesity and sedentary behavior.…”

Fatores associados à contribuição dos cuidadores para o autocuidado na insuficiência cardíaca

“…Caregivers of patients with HF experience different levels of burden and strain 38 . In this study, caregiver role strain was not a predictor of caregiver contribution to SC in HF in any of the models ( Tables 4 and 5 ).…”

“…Os cuidadores dos pacientes com IC experimentam diferentes níveis de sobrecarga e tensão (38) . Neste estudo, a tensão no papel de cuidador não foi preditora de contribuição do cuidador para o AC na IC em qualquer dos modelos (Tabelas 4 e 5).…”

Factores asociados a la contribución de los cuidadores para el autocuidado de la insuficiencia cardiaca

“…Los cuidadores de los pacientes con IC experimentan diferentes niveles de sobrecarga y tensión (38) . En este estudio, en cualquiera de los modelos (Tablas 4 y 5), la tensión en el papel de cuidador no fue predictora de contribución del cuidador para el AC en la IC.…”